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How long for hormone therapy to kick in?

User
Posted 27 Mar 2016 at 20:47

Hope someone can give me an idea as to how long hormone therapy takes to start seeing an improvement in symptoms (due to PSA going down and cancer being held back) after hormone therapy starts. (I am sure this differs from person to person but am talking generally here). My fiance had his third lot of degarelix (firmagon) hormone treatment last week and just seems to be getting worse. He's sleeping a lot of the time - worse than ever, is as weak as a kitten when he is awake and keeps feeling very giddy, His pains are getting worse (despite being on paracetamol,gabapentin, oramorph and morphine patches (which have even been upped) especially in his hips. He has problems with his bowels and waterworks (including incontinence issues). In fact the only slight improvement he has seen is it's not quite as painful to wee (was excruciating for him prior) but he was given tamulosin for this so I can't help but think that maybe it is this medicine that is helping with that rather than the HT. Really starting to be concerned that his cancer is just getting worse and may even be hormone resistant. We have been referred to an Oncologist but won't see him until April 11th which seems ages away. Would be grateful for other people's experiences - thanks.

User
Posted 27 Mar 2016 at 22:12

Hi Jilly,

The thing is, that as most of us on HT (Hormone Therapy) are given 3 month shots, the tendency is not to have our PSA measured untill 3 months after we have had the first shot, by which time there is normally a marked reduction in PSA, but that doesn't help knowing what has happened in the meantime.

We often notice the side effects first, and tiredness / lethargy is a fairly typical side effect.  Accordingly if your fiance is sleeping more than ever, then this may be a sign that the HT is working, albeit a frustrating sign and not necessarily what you were hoping for?

Your profile mentions ED as one of your fiances problems, this should get progressivly worse, as the HT will reduce his libido to the point where he no longer has salacious thoughts let alone erections.

I found tamsulosin kicked in pretty fast, indeed the day I first took it.  So if your fiance is experiencing improved continence and a better flow, this is likely to be the tamsulosin, rather than the HT.

Hot flushes, like menopausal women get are another classic side effect of HT, if he starts getting these, and it feels like the top of his head is on fire, that is a sure sign the HT is working.

I am guessing that if you have Oncologist appointment on 11th April, your fiance will be having PSA test a few days prior to the appointment?

If so that should give a good indication of how his PCa is responding to hormone deprevation.

Hope this helps?

Best of luck.

:)

Dave

Edited by member 28 Mar 2016 at 10:36  | Reason: Not specified

User
Posted 27 Mar 2016 at 22:26
Jilly

Welcome to the forum. Do you have a specialist nurse you could speak to? I read your post and felt a bit uncomfortable that things were getting worse not better and I'd not be happy if that was me. I was particularly struck by you saying that he is having bowel problems, along with urinary issues, have you thought of having a PSA test done by your GP? We had lots done by ours in the intervals between hospital visits.

My first suggestion is that you ring and speak to the specialist nurse who should help you with these valid concerns, then the GP for a PSA test.

To your question on how quickly it kicks in, my hubby went from 25 to 0.8 in three months and lowers still after that, the number reduced in the first 6 weeks but I can't remember what to, but a big drop. My hubby has always found HT to cause severe fatigue, he did have awful hot flushes but they have long since stopped. He didn't get worse pain on HT, in fact it improved and that's what we would expect.

I hope you can speak to someone very soon.

Kindest regards

devonmaid

User
Posted 28 Mar 2016 at 01:20

Jilly, some seems very wrong here - I would have said it sounds like tumour flare but I don't think you can get flare with Degaralix. In your shoes, I think I would be on the phone to the nurse specialist as soon as possible just to get some reassurance - like could he possibly be allergic to it or something. Also, does he have mets in the spine and has spinal cord compression been explained to you? This is a very serious potential complication which can present itself as constipation or loss of bowel control and weakness / pins & needles in the legs which can lead on to paralysis.

Don't wonder about whether to bother people - just get on the phone and get advice from the hospital, that's what your medical team is for.

PS. Just re-thinking it, who has been increasing his pain relief prescriptions? If it was the GP, perhaps not a good idea to get advice from the GP about these developments?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Mar 2016 at 05:42

Ho jilly
With my first ht prostap I had a lit of itching
Couldnt stop it
They changed me to zoladex found it much better just have the hot flushs no and again its been 1 year still get fatigued and lack strength
Would ask if they will change HT
Regards
Nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 28 Mar 2016 at 10:45

Thank you so much for getting back to me. I have been finding this site so helpful and am learning as I go. (Only knew vaguely where a prostate was before all of this let alone anything else!). I'll try my best to answer the questions raised.

The symptoms that my fiance had prior to diagnosis looking back (put down to other medical problems at the time) were ED (got worse and worse over time) and tiredness. He would feel unwell and then would go to sleep for a couple of days getting up for toilet visits and a bit of food when he was able. The final straw was the extreme pain on urinating/poor flow and continence issues (bowel and bladder). How it wasn't recognised sooner is beyond me. He is now exhausted doing even small tasks, says he's feeling weaker each day and is in more pain. He was diagnosed with advanced cancer with bone and lymph mets. He is having loads of hot flushes.

Dave: My fiance had a PSA test taken the morning of his last HT but am not sure if we will need to wait until we see the Oncologist or if it's better to ring up for the results first (was done at his GP's). I can see that the HT is working in the sense that it must be knocking down his testosterone (really bad hot flushes happening a lot) but am worried that it might not be having a great affect on the cancer itself as his pain is getting worse. Hope he gets to keep some salacious thoughts though - this is such a cruel disease for you men as it is!

Devonmaid: We do have a specialist nurse who was helpful face to face but otherwise we have to leave a message then wait for her to get back and then wait again for whatever help if any. We mentioned at the last urology appt. about attending her ED clinic - she said she would make an appointment for us but we're still waiting about a month later. Will need to chase that up. His bowel issues are a particular worry - he says it feels like his elastic band has gone and so sometimes he has seepage (to be polite!) and won't even realise until he feels that his backend has got wet. (hope nobody's eating while reading this post!). I'm encouraged that your husband saw the hot flushes drop as my fiance is currently plagued by them. I am hoping that his will lessen as his body adjusts.

Lyn: He does have a LOT of bone mets. When we saw his bone scan it looked like a dalmation or a dot-to-dot colouring page. The black areas were all over - seemed to have them in every bone. I can't remember his spine specifically just remember thinking oh my God they're everywhere so think it was his spine too. We weren't told about spinal compression but I am worried about his vulnerability to it (know only of it's existence through this forum) especially in light of his bowel problems and, at times, he gets very weak legs too. It was his GP who added in the oramorph and added another morphine patch to his existing one - just all feels a bit like tiding him over until we see the Oncologist. Felt like initially everything was very fast and we were seeing this person and that person. Now he's been diagnosed as advanced and the HT is the treatment he should be on regardless it feels as if we're in some sort of limbo until we find out more at the oncology appointment.

Nidge: My fiance would get extreme itching at the same time every afternoon even prior to diagnosis! Apparently it can be a sign that the body is trying to reject the cancer as it sees it as a foreign object? Sorry that you had the allergy experiences you had. In my fiances case, it's not that I think he's allergic it's just that I can't see it helping any symptom at all and he seems to be getting worse. I would have presumed that some signs would get a bit better with treatment if it was impacting on the cancer? I don't know if I'm being naiive or not and still feel that I have so much to learn - that's why this site and people like yourself have been so helpful to me. Profiles are extremely useful too for the same reason and helps to see where other people are who are in a similar sort of boat.

Thanks again everyone - I will contact the specialist nurse to see what she has to say - better safe than sorry as the saying goes.

User
Posted 28 Mar 2016 at 11:58
Jilly

I am so sorry your Fiance is going through all of this, thank goodness he has you there to support him.

I think your description of what is happening with your fiance suggests that things are not right at all.

It may only be 2 weeks until you see the Oncologist for what appears to be an initial consultation, but more should be done in the interim. Easter weekend or not.

When HT works it usually starts quite quickly, sometimes it can cause a flare up when the cancer tries to fight it off. Degarlix has not been given in combination with another drug like Casodex (Bicultamide) . So, as Lyn points out, tumour flare may not be a known side effect of this drug and therefore not the cause of the increasingly distressing symptoms. However something needs to be done.

The rest of this post is not meant to scare you, I am always worried that I might be too voiciferous on this particular subject but I really do have a genuine concern.

The problems you describe of bowel and urinary incontinence, weak legs and the increasing pain, which neither morphine patches or Oramorph can break through, would have me on the phone to the clinical team first thing in the morning. I know spinal chord compression sounds terrifying, and believe me it can be, but if diagnosed quickly it can be reversed. I very much doubt that the NHS out of hours service would be of much help although I would still give them a try today. You might mention that you are aware of the condition, the commonality of it in metastatic cancer and the need to act quickly. The fact that you mention it and are genuinely concerned should provoke some action. If nothing more they could contact the out of hours Oncology consultant at your hospital. Then they could at least look at previous scans to see if it is a possible SCC. If they are concerned they will arrange an emergency scan.

In the meantime just to be on the cautious side make sure your fiance does not try to move about too much and definitely no lifting or trying to stand up or move around without support just in case his legs go wobbly. A fall is the last thing either of you need right now.

I am accutely aware that sometimes we can all over react, but in my own experience you sometimes have to take the lead and be a little assertive with the medical teams. They do a great job in general terms but I would rather feel like a nuisance now than live with the regret of just accepting things.

I will be thinking of you and hoping this is no more than just a bad case of side effects at the start of your Fiance's treatment.

My very best wishes

xx

Mo

User
Posted 28 Mar 2016 at 11:59

Hi Jilly,

You can easily find out what your fiances PSA test results are, but you need to be cute and ask the right questions.

The results are normally back at the GP's surgery within a couple of days of the test. 

Every time I phone my GP's surgery and ask for the result the receptionist allways tells me my PSA was 'normal'.

I then have to say to her, 'there should be a number, what is the number?' and then she tells me.

Honestly it is like deja vue, Ground Hog day, exactly the same conversation every 3 months.

HT was explained to me like this, not exactly scientific but it helped me to understand it.  Some of the cancer cells are dependent on testosterone others are not, so think your tumour as a bowl full of mixed peas and sweetcorn, the HT causes the sweetcorn to die but you are still left with the peas, so the tumour physically shrinks in size, just like the bowl would shrink when the sweet corn was taken out of it.

If as you say, your fiance has bone mets, these will be shrinking a bit too, this will be rearranging his internal geography and might be putting presure on the nerves causing him pain.  Like Lyn said in her post you need to be aware that HT may be changing the internal pressure on the spine.  So just like sciatica causes pain in the legs as the discs in our spine dry out and put pressure on the spinal cord, so bone mets may be shrinking on HT and putting presure on the nerves.

So I can only repeat Lyn's advice, you need to get in touch with specialist nurses / GP / Consultant as soon as possible.

Trouble is if you go anywhere near a hospital today, they will probablly admit your fiance and keep him in the Urology ward where there are all sorts of nasty infections waiting to be caught.  So it's a judgement call, these things always seem to happen at bank holidays!

Best of luck.

:)

Dave

  

User
Posted 28 Mar 2016 at 13:07

Hi Dave and Mo.

Thanks for your explanation Dave it makes a lot of sense to me and is a good analogy to put to my fiance. it seems to be working best for us if I do the research, process it in my mind and then put things to him as and when (sometimes if!) he is able. I have to prioritise and put things in such a way that he can then process (he also has PTSD after 19 years of service - Navy and RFA). The image of the bowl makes things a lot clearer and hopefully what is going on is just a period of adjustment for his body. I am also thinking that if the HT is making the sweetcorn die off then they are not going to be too happy about it and might put up a bit of a fight! I also appreciate the tip of asking for an actual number when we ask for the test results

I agree with you Mo that sometimes the health professionals need a little push. I can't fault ours to date in a way but I have had to give nudges here and there even at this stage to get things sorted! I am thankful for your thoughts and they actually echo what I have been thinking the last few days. He has been having trouble for a long while now and I thought the Urologist would have mentioned something when we got the scan results but on further reflection I feel that he was just passing us over to Oncology as there wasn't more he could do his end (so to speak!). We were told the appt. would take about 2/3 weeks to have but it's going to be nearer 6 weeks! Presume the Urologist will have thought he would have been seen by now. Thank you for your advice on how to help him best in the meantime - I will ring first thing in the morning to express my concerns to the nurse.  

Edited by member 28 Mar 2016 at 13:15  | Reason: Not specified

User
Posted 28 Mar 2016 at 18:15

Hi Jilly,

Nice to know you found my post helpful, give your other half a tip from me, I am also an ex-sailor, I was merchant navy, but used to know a few RFA guys when we were at nautical college together.  A drop of rum won't do him any harm, it relaxes the muscles and might reduce the tension in his joints.  If I have had a few rough nights, with multiple toilet breaks etc, I find a good drink gives me a good night's sleep.

:)

Dave

User
Posted 28 Mar 2016 at 19:18

Sounds like a good idea Dave - will let him know. Might try some myself !

User
Posted 28 Mar 2016 at 20:17
Jilly

I'm so glad you are going to ring the specialist nurse, waiting six weeks for an appointment with an oncologist, given your fiance's condition seems excessive to me. Please make sure you tell them about the bowel, water and leg issues, this will alert them. I do love the NHS but having seen some of the rubbish my own OH has had to put up with I do think they need leading sometimes.

Good luck tomorrow.

Love Devonmaid xx

 
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